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Old 04-06-2010, 06:39 PM #11
dahlek dahlek is offline
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Default Monika, just because it's permanent? It could be worse...soo...

Don't despair! Getting down to the meds [aka CIPRO?] Why was he on it, for the rash? I truly doubt that it would be used for that unless other factors [such as bloodwork] showed something else... I say this because it was a long bout of pneumonia treated on 3 different anti-b's [one was CIPRO] that likely caused my own immune related neuropathy. 'Bugs' these days don't get treated easily as they used to when I was a kid? But then there weren't many options either. And, I like to think I'm not THAT old.
As for trying to post and having it go 'POOF!'? Happens to all of us... Very exhausting tho, isn't it?
OK go and ask for copies of tests and medical records, in some states it's easy, you go to the office, fill out a form and they get back to you and you pay $$ per copy and go on your way. Other states? Apparently you need to get the doc's release for copies of the records. Where I live it's easy, either go in person and fill out form, or go pick up after asking for a form and sending it filled out back to them. But, you usually have to present ID to show that you are legally able to get the copies. Power of Attorney or your husband present w/id should do the trick then.
Hang in there, keep asking questions and don't be shy! We can share what we've learned and likely even learn more by those questions.
The more we know, the better armed we can be to deal with this all! And it does take 'dealing with'! - 's - j
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Old 04-06-2010, 06:56 PM #12
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Default The Appointment

Quote:
Originally Posted by monika View Post
I wanted to ask though the doctor tells Kurt over and over the pain and numbness is permanent. This is very very upsetting for my husband to hear. Is this true? Because I am reading posts that say it does get better with treatment. I will bring a note pad to the doctor appt. What should I ask?
Again, may i make mention of the 'Liza Jane' Spread sheets to have with you at your appt. You can print them off....just Google it if you can't find the reference post in the 'stickies' at top of this forum.
By being 'armed' with this, you'll be able to have more ammunition with you in case the Dr DOES do the "I'm sorry nothing we can do" thing. There are MANY things that can be done! And i would NOT accept your Dr telling you this situation is 'permanent'. If he insists on this......have your pad ready and ask him by what diagnostic standards is he making this prognosis. THEN, indicate (Per Liza Jane's spread sheets) WHY can't certain tests be done that haven't been done yet.
Be ready to PIN this Dr DOWN with targeted questions if he's gonna try and write off your husband's situation without digging deeper into PN.
Now maybe you are interpreting your Dr saying "There is no cure for PN" ?
That's One thing. BUT this does NOT mean his condition is permanent!!
Those are two completely separate pieces of information.

And don't worry if you DO get emotional! maybe that's for the better!
This Dr, which I'm sure you are paying top dollar for NEEDS to DO his HOMEWORK and if he CAN'T follow thru, then ask for a referral to another Dr who knows more about PN.
There is absolutely no reason for you and your husband to lose hope.
There ARE answers! There may not currently be a 'cure' for PN.....BUT there are many actions that can be taken to potentially help turn his condition around!
You need definitive reason from this Dr for saying this is 'permanent'. He needs to prove that to you via diagnostic workups and test results.

PLEASE get your hands on these LizaJane sheets I keep harping about! They will equip you with knowing WHAT to ask for !!

Please let us know how the appointment turns out!

Truly caring & Praying
Rae
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Old 04-06-2010, 07:03 PM #13
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Default Here is a very insightful link

This is very detailed info about PN:

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

I have a printout of this and refer to it all the time.....

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Old 04-07-2010, 11:29 AM #14
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Yes, I agree, also they have him on oxycontin, which I am very upset about.


Quote:
Originally Posted by cyclelops View Post
Xanax is not a good drug if you have PN. It causes a withdrawal like syndrome every time it wears off, and it is very much like PN pain, if not PN pain. It can not be stopped cold turkey without severe physical issues.

I hope your husband can find a cause for his PN. Hopefully the neurologist can assist you.
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Old 04-07-2010, 12:06 PM #15
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Lightbulb

While the official word of mouth on Fluoroquinolone induced PN
is that it is permanent, Dr. Jay Cohen MD has a communication on his website from a patient who did IV glutathione supplementation, that helped.

http://www.medicationsense.com/artic...ity070508.html

This would not be available from a neurologist, but a holistic doctor or environmental doctor may be doing it in your area.
Glutathione IV is part of a supplement called Meiers cocktails and can be ordered thru some compounding pharmacies.
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Old 04-07-2010, 02:51 PM #16
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Thanks so much I printed that article up and will bring it to the doctor appt tomorrow. Thanks!
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Old 04-08-2010, 01:52 PM #17
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Well it is just a few hours away, the appt. Sorry if I seem a little over board. My mom had very strange symptoms in 1976 and for nine months the doctors were not sure what it was. Then she died in November of 1976 of a brain tumor. They did a cat scan saw something about a week before she died but they did not know exactly what it was. I was only 14 at the time and she died very suddenly, so it was quite a shock to me and traumatic to say the least. So now with this happening to my husband, I am extremely nervous and I do not always trust what the doctor's think it is, since I lost my mom because they misdiagnosed her condition. I do not want to make the doctor mad by being too demanding. Huh boy. I can feel the tear well up...

Quote:
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I think he took the cipro yikes! thanks for that information...
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